£150k fundraising effort helps twins to get trial drug
PARENTS THANK PUBLIC FOR DONATIONS AS SONS BATTLE RARE ILLNESS
HUCKNALL twins who have an extremely rare genetic condition are trialling a new drug after more than £150,000 was raised to help them.
Freddie and Louie Dawkins, 13, were diagnosed with a rare form of Batten Disease, called late infantile variant CLN5, in 2009.
As yet, there is no cure for the disease. The twins’ parents, Andrew Dawkins and Sarah Finney, said the average life expectancy is just 14 years old.
The genetic disease affects the nervous system, causes seizures, visual impairment and loss of motor skills including the ability to walk, talk and communicate.
Both twins are blind and severely autistic.
The money raised so far has gone to fund research at Cardiff University and University College London.
This research has enabled the development of a new trial drug that the twins have been using since the start of the year.
Dad Andrew Dawkins, said the drug had had a big effect on their condition and they have not deteriorated as expected, giving the family more time to fund fighting the disease in the quest for a cure.
Last week, the family returned from a holiday in Barcelona which the boys loved, said dad Andrew.
Mr Dawkins said: “We can’t thank the public enough for everything they have been doing for us and the boys.
“Their support is amazing. Around £160,000 has been raised so far.
“It’s what keeps you going. We just want to give them as normal a life as possible. The fundraising gives you something to focus on.
“Sarah and I are both full-time carers for the boys. We do our best for them and other families have contacted us about Batten Disease.
“The funding has led to the trial drug that the boys have been taking this year. We can see they are not deteriorating as we were told they would.
“Only seven other kids in the county have CLN5 and I believe Freddie and Louis are the only twins in the world to have it.
“CLN5 is one of the rarest forms of Batten. The drug company want to see results of improvement in the boys if they are to keep funding it.
“The tablets costs £46 each and the boys have three each a day. So we hope they can see the improvement.
“We will keep fundraising and do all we can to fight the disease.”
Hucknall Leisure Centre will be hosting a “fitathon” in November which will go towards the family’s Batten Battle.
To donate to the Batten Battle go to https://battlebatten.com/